Aligning the service user perspective with public health targets to develop sexual health services: Informing educational and practice

preparation of sexual health advisers through participatory action research

Anne McNall - Senior Lecturer, School of Health, Community and Education Studies,

Northumbria UniversityNewcastle upon Tyne

anne.mcnall@northumbria.ac.uk0191 215 6139

This presentation covers…

The rationale for the doctoral proposalThe ethical challenges presented by

sexual health researchThe ethical challenges presented by

participatory action researchThe proposal and how it seeks to address

these issues.

My background

Nurse & Midwife, specializing in Sexual Health since 1994

Pathway Leader to BSc (Hons) Sexual Health here within the CiPD framework

Providing one of 3 Sexual Health Adviser (SHA) courses nationally, working with DH and NMC to develop national standards for SHA education

Working collaboratively with trusts across the North East region to develop workforce to respond to sexual health need.

DNSc student at Northumbria

Partnership and participation – why bother?

Service user and carer participation in the development, delivery and evaluation of services and care is a major component of contemporary health and social care policy

Section 11 of the Health and Social Care Act (DH 2001):

places a legal duty on the NHS to involve and consult patients and public in the planning and development of health services and in making decisions that affect the way those services operate

this duty has been a legal requirement since January 2003

Reiterated in Section 242 of the National Health Service Act (2006)

Partnership & participation – why bother? MedfASH standards for sexual health services(2005) “Commissioners and Services should:Promote active user participation and involvement in the

planning and organization of servicesDevelop their understanding of the various communities

they serveRecognise and respond to social exclusion,

discrimination and power imbalances (such as those between genders or individuals) in a way that enhances access, and promotes effective use of services

Ensure all staff involved in sexual health services are committed to non-discriminatory working practices and delivery of care” (MedfASH 2005, p33)

Review of the literatureLittle evidence of service users and carers views

being sought in the sexual health contextMostly studies failed to explore perceived need

– focused on satisfaction with what was offeredSome evidence of unmet needSome useful qualitative studies which explored

lived experience :–sexual health service patients can feel responsible that their problems result from their own behaviours, feel stigmatized and reluctant to give negative feedback.

Sexual health services offer extra confidentiality (DH,2000)

Established methods of PPI unlikely to be appropriate for sexual health context

Developing Sexual Health Practice - Which approach?Existing medical model of sexual health practice,

separation of services, discourses of sexual health crisis, upstream /downstream conflict – need for more consultants

Public health targets highly visible in sexual health context and services and interventions must be explicitly linked to them (48 hour access target to GUM)

Current evidence base must inform practice development – might conflict with user preferences

Service providers also have insight and their views must be incorporated into decision making

Diversity of need, multiple views, no one answer

How to do it….

How can the service user view be accessed in the context of sexual health services?

How can those who don’t use services be accessed to elicit their views?

How can other relevant issues be considered?What are the barriers?Will the findings impact on service delivery?

(DH, Getting over the wall 2004)

A hierarchy of participation(Hart 1996)Mode of participationMode of participation Involvement of local Involvement of local

peoplepeopleRelationship of research Relationship of research and action to local peopleand action to local people

Co-optionCo-option Token; representatives are Token; representatives are chosen, but no real input or chosen, but no real input or powerpower

OnOn

ComplianceCompliance Tasks are assigned, with Tasks are assigned, with incentives; outsiders decide incentives; outsiders decide agenda and direct the processagenda and direct the process

For For

ConsultationConsultation Local opinions Local opinions asked;outsiders analyse and asked;outsiders analyse and decide on a course of actiondecide on a course of action

For /withFor /with

Co-operationCo-operation Local people work together Local people work together with outsiders to determine with outsiders to determine priorities; responsibility priorities; responsibility remains with outsiders for remains with outsiders for directing the processdirecting the process

WithWith

Co-learningCo-learning Local people and outsiders share Local people and outsiders share their knowledge, to create new their knowledge, to create new understanding, and work together understanding, and work together to form action plans, with outside to form action plans, with outside facilitationfacilitation

With/byWith/by

Participatory Action Research

Enhancement or emancipatory approach (Holter & Schwartz- Barcott, 1993)

Empowerment model (Hart & Bond, 1995) • Consciousness raising• Shifting the balance of power• Enhance user control• Negotiated definition of problems• Negotiated definition of improvement• Collaborative decision making

Boog, B. (2003) The emancipatory character of action research, its history and the present state of the art. Journal of Community & Applied Social Psychology 13 426-438

What is participatory appraisal?

A flexible and practical participatory action research approach

Provides a framework to bring together communities and decision makers

Uses simple visual tools to increase inclusion

Is interactive rather than extractiveIt is a rapid way of moving from insight to

action at low cost

Participatory Appraisal www.northumbria.ac.uk/peanut Is about:ResearchEducationCollective action

It involves:DialogueEmpowermentUnderstanding

So how?Look for key informants, individuals and groups -

not randomly selected, purposive sampling- large numbers

Uses a variety of tools to gather information/gain insight/make suggestions for change

Multiple perspectivesTriangulation of dataFindings must be fed back and verified by the

community themselvesResult in action/ policy change

Tools

MappingTime linesForce field analysisPie chartsVenn diagramsDaily schedulesFlow charts

Causal impact diagrams

Criteria rankingImpact rankingEvaluation wheelSpider diagramCard sortingCompleting

statements

Mapping

Spider Chart

Causal Impact Diagram

Daily Activity Chart

Force Field Analysis

North Tyneside PCT

Commissioned study – neighbourhood renewal funding

Recruited 3 teams of 3 co researchers – 3 public health practitioners, 6 volunteers from voluntary sector, community development, social work, local authority, community health council

18 days in total 5 days training in PAEthical approval10 week study3 days for development of reports

Research informing practice development

Practice development is a continuous process of improvement towards increased effectiveness in patient centred care. This is brought about by helping healthcare teams to develop their knowledge and skills and to transform the culture and context of care. It is enabled and supported by facilitators committed to systematic, rigorous continuous processes of emancipatory change that reflect the perspectives of service users.

Garbett & McCormack (2002, p88 my emphasis)

Research informing curriculum proposal/ workforce development

Idea of a sexual health practitioner who could “work in new ways” emerged

Proposal commissioned by Department of Health to recommend how sexual health practitioners should develop to respond to current “sexual health crisis” (McNall 2005)

Other issues became priority – regulation of health care professions (Sexual health advisers not registered as a professional group)

The aims of initial sexual health adviser education A practitioner able to work in new ways…..

Work in partnership to impact on sexual health through the Search for health needs in relation to sexual health and wellbeing Stimulation of awareness of sexual health needs Influence on policies affecting sexual health Facilitation of sexual health enhancing activities

Rather than a sexual ill health model Fits well with Specialist Community Public Health Nursing, also

allows registration and regulation Required negotiation and agreement with Nursing and Midwifery

Council, Society of Sexual Health Advisers Council, support from DH (Action point of the National strategy for Sexual health & HIV (DH, 2001)

Agreed September 2007, Guidance document on national implementation November

2007(McNall 2007)

Source: Zuber-Skerritt, O. Perry, C. (2002) Action research within organisations

National Curriculum and essential skills cluster proposal with DH/NMC/SSHA

North Tyneside PA study to develop Sexual Health services

Discourse analysis of PA process,

National Dissemination of curriculum content and approaches and organisational learning that occurred

Development of curriculum to equip practitioners with required PAR skills

Research informing theory development

McCormack et al (2004, p44)

“As with emancipatory action research, emancipatory practice development results in personal theory and through the vehicle of systematic evaluation it can also generate public theory and knowledge.”

Ethical challengesWhilst PA offers a potentially innovative way to develop

practice, it has ethical considerations and challenges common to AR and PAR

Williamson & Prosser (2002) AR

Khanlou & Peter (2005) PAR - offer a framework for evaluating studies

Social or scientific valueScientific validityFair subject selection Informed consentRespect for potential and enrolled participantsFavourable risk/benefit ratio Independent review

Social or scientific value

Aim is to improve public health & wellbeingAcknowledge the political and power imbalances

involved in stigmatized areas of practiceEmancipatory – gives those disempowered or

without influence the opportunity to contribute at individual and service development level (THT 2004, 2005 1/3 of PCTs have not undertaken a sexual health needs assessment)

Philosophy of PA

Scientific validity

Peiro et al (2002) see PA as enabling comparison of health strategies in a way that can be understood by lay people as well as professionals.

Provides insight into participants beliefs and value systems through their perception of their needs. Wide reaching.

Range of qualitative data collection methods and triangulation of questions and tools

Fair subject selection

Must include diverse population to be representative, specifically those with greatest sexual health need and/or excluded from involvementYoung people, children in the looked after

system, MSM, refugee and asylum seekers, those with MH problems, physical impairment or learning difficulty.

Must use large number of participants until saturation of data is reached

Fair subject selection – how?

Target established community groups, using co researcher community knowledge

(3 co-researcher teams, approx 3 groups per day x 10 days = 90 groups)

Some streetwork (2 hours, 90 responses)Staff working in sexual health servicesDecision makers in the Sexual Health

Implementation Group

Respect for potential and enrolled participantsCo researchers:

Informed consent, time involvement, political & professional implications of questioning current practice.

Research involvement contract (Involve, 2005) Reimbursement of expenses or payment, and implications if in receipt

of benefits (DH 2006) Beebe (1995) PA tools are powerful, quickly uncover important and

potentially sensitive information, and requires the co researcher to give information.

Co-researcher training, philosophy and tools of PA, applied to SH context.

Working in co researcher teams of 3, one of whom is a registered accountable practitioner with subject specific and local service knowledge, and interpersonal skills to manage situations arising - stay within sight of each other.

Respect for potential and enrolled participants/Informed consentResearch participants

Informed consentGroups.Written information in a range of accessible formats

sent to established groups 1 -2 weeks in advance. NB. Not being accessed as service users (although some will be) Choice of attending group session for PA study.

Streetwork. Verbal information given, written info if appropriate

Staff Usual information & consent forms with signature Anonymity & Confidentiality

Sexual health service users are given the choice of whether to provide personal identifying data (DH 2000)

Principles of informed consent read again at group meeting - co researchers verify that this was done. No individual signatures requested

Reminded of confidentiality risk of sharing personal information in group – individual option to provide feedback..

Respect for potential and enrolled participants/ informed consentResearch participants

Vulnerable groupsExclude under 13’s (not able to consent under

sexual offences Act 2003)13-16 Year olds assessed using the North Tyneside

assessment tool (Based on Fraser/DH guidelines 2004) for their competence to consent.

If deemed competent, would be given access to information and sexual health services without parental consent.

Those with learning difficulty, mental health problems also assessed using same tool

Favourable risk/ benefit ratio

PAR – potential for raising awareness and consciousness, but also expectations

PA asks participants to identify issues, solutions and prioritise actions, therefore is realistic in what it can achieve, and highlighted in information sheets.

Service user perspectives are required aspect of contemporary practice– little evidence of this occurring in SH – transferable approach for other areas of practice.

Potential risk to research participants - CRB checks, training, support of co researcher team.

Independent review

North Tyneside R& DHCES ethical reviewWhat are your concerns?

References Department of Health (2000) National Health Service Trusts and Primary Care Trust (Sexually Transmitted

Diseases) Directions. Department of Health (2001) The National Strategy for Sexual Health & HIV. London, DH. Department of Health (2003). Strengthening Accountability. Involving patients and the public. London.

DHMcCormack, B. Manley,K. Garbett, B (Eds)(2004)Practice Development in Nursing. Blackwell Publishing. Oxford

Department of Health (2004). Getting over the Wall: How the NHS is improving the patient’s experience. London. DH

Hart, E. Bond, M. (1995) Action Research for Health and Social Care : A Guide to Practice. OU Press Holter, I.M. & Schwartz-Barcott (1993) Action research:what is it? How it has been used and how it can be used

in nursing? Journal of Advanced Nursing18 (2) p298-304 Khanlou, N. Peter, E. (2005) Participatory action research: considerations for ethical review. Social Science and

Medicine 60, 2333-2340 McNall, A. (2005) A Second Draft of the Consultation Paper on Initial Sexual Health Adviser Education and Preparation The Society of Sexual Health Advisers (SSHA) Funded

by the Department of Health. Unpublished Paper Medical Foundation for AIDs and Sexual Health (2005) Recommended Standards for Sexual Health Services.

MedFash/DOH. London. Nursing & Midwifery Council (2007)Circular 34/2007 Criteria for migration via portfolio to the SCPHN part of the

NMC register for sexual health advisers. http://www.nmc-uk.org/aFrameDisplay.aspx?DocumentID=3426 accessed November 2007 Nursing & Midwifery Council (2007) Circular 35/2007 Programme requirements for registration as a SCPHN –

Sexual Health Advisers http://www.nmc-uk.org/aFrameDisplay.aspx?DocumentID=3427 accessed November 2007 Peiro, R. et al. (2002) Rapid appraisal methodology for ‘health for all’ policy formulation. Health Policy 62 (3), 309-

328. Terence Higgins Trust, British HIV Association, Providers of AIDS Care and Treatment (2004) Clinical Trials. THT,

BHIVA, PACT, London. Terence Higgins Trust (2005) Achieving the 48 hour access target. THT , London. Zuber- Skerritt, O. Perry, C. (2002) Action research within organisations and university thesis writing. The

Learning Organisation 9 (4) 171-179